Mar 30, 2012

Happy Walking and Playing

Most of the people who read this blog know us personally, but there are some who find this blog through the internet. I have information about making blenderized food for gastrostomy tube feeding, and a LOT of medical information which parents of special needs kids are always looking as a point of comparison. People researching hip dysplasia, sagittal craniosynostosis, pediatric ptosis, or cerebellar hypoplasia may find this blog. Then there are the YouTubers. I don't know why but the videos I've posted on YouTube for educational purposes (like tube feeding) and ones I've posted as a way to put videos on this blog have a lot of YouTube viewers and subscribers. So this explanation is mostly for them, but even if you aren't a "stranger" you might be struggling to understand why I am doing this Happiness Photo Project or Happiness Project.

Sometimes I find it a challenge to see the good because the bad seems so much easier to focus on. I know I'm not alone in the tendency to do this. If I can find the happiness or gratitude every day then anyone can. Doing it every day for a whole year, that will be a challenge because aside from life being life, having a child with complex medical issues is very difficult. Yesterday I spent about 6 hours on the phone with clinics, hospital billing, DMEs, insurance, Medicaid. Just trying to get answers and the best treatment for my child and tie up loose ends. I made some progress, but a lot of that time feels like a waste. And this was about the 4th day in the past week. The fourth day I'd planned to do other things that I wanted to do (my photos and get out of the house). We have all dealt with voice mail systems that don't let you get to a real person, or when you do the person is unable or unauthorized to help you.  After hours of that it creates a lot of frustration that can take your mind to very scary places where you wonder if it's all worth it. Early in this journey I had a lot of those days but now they are few and far between.

The answer is YES it's worth it. Even when it doesn't feel like it. Dark days like these really require that I look hard for the happiness that is there. When the older kids came home and required my attention with homework and a snack my mood lifted some. Even though it will somewhat spoil my Happiness Week 13 post I had to share what Ainsley did after that.

Evie and Adrian were in Adrian's bedroom and Ainsley decided she wanted to be with them. But rather than crawl down the very long hallways like she normally would she pushed her walker over to the step so she could use it. She got in it by herself (which is tricky because hers pushes really easily especially on the hardwoods) and then steered it down the hall, only needing a little help through the doorway (the walker has to be facing at a 90 degree angle.) You might notice that I wrapped the front wheel hardware in bubblewrap and black duct tape to try to protect the walls and doors from becoming gouged. We're hoping she will start using her walker regularly in the house. Hoping this is the just the beginning. And hoping one day the walker won't be necessary.


Hooray! I love that she feels SAFE and CONFIDENT enough to do this! The more she is motivated, the more likely it is that one day she will walk independently.

I know she should have her AFO's on instead of being barefoot, but that would have spoiled it for her.

Steve was out for the night with friends and Evie and Adrian decided to "dress up" Ainsley as a princess. Adrian was the magical tiger who rescues the princess and Evie was her lady in waiting. They used to play like that all the time, but as they've gotten older it's less frequent especially now that they are "plugged in" with a Nintendo DS and an IPodTouch since receiving them at Christmastime.

Ainsley was still a bit of a reluctant player, since she gets treated like a real live doll. It was funny, when one of the dresses was scratchy she signed over and over that she wanted it off, so Evie thought if she showed her "how pretty" she looked in a mirror she would be happy. It was hilarious. She looked in the mirror and then threw it. Message received. Looking like a pretty princess isn't worth being uncomfortable. I agree Ainsley. Comfort first before beauty.

Still she was a pretty good sport and had some fun. I think she liked this outfit better. Except the flower.

Evie tried showing her how pretty it was in the mirror again. We asked her if she was going to kiss herself in the mirror which she thought was funny. So then when we laughed she kept doing it over and over. It turned out to be a fun night. Especially compared to my awful day.  I'm a lucky mommy. I love seeing my kids spending time together and playing like this.

Today is Friday, the last day before spring break and Easter so hopefully there will be more of this kind of play over the next week and enough togetherness that they are happy to go back to school on the 9th.  I'm wishing you all a good weekend...and until Monday.


  1. Oh my goodness...I needed the pick-me-up that these pictures gave me this morning! What a happy moment in your household. She looks great and I just love the playtime and how she let you know what she liked and didn't. Thanks for sharing!

  2. Those pictures of Ainsley are BEAUTIFUL on so many levels!